The short answer
- Most of the changes are part of dying, and not usually painfulSleeping most of the time, not eating or drinking, pauses and a rattle in the breathing, and cool, mottled hands and feet are all described by the NHS and the hospices as usual in the last days.
- Comfort matters more than food and drink nowMouth care, a change of position, a calm room and someone sitting with them are what help most. Hearing may continue even when they seem unconscious, so keep talking to them.
- For anything distressing, ring the nursePain, agitation, breathlessness or a new rattle are for the district nurse or hospice team, or the out of hours number they gave you. Medicines can ease all of these.
- After an expected death, there is no rushYou do not need to ring 999. When you are ready, ring the GP or the nurse, or NHS 111 out of hours, and a doctor or nurse will come to confirm the death.
Clinical information is from the NHS, NICE guideline NG31, Marie Curie, Hospice UK and Sue Ryder, checked in September 2026. Everyone is different, so ask the nurse or GP about your own relative.
The signs
The changes you may see in the last days, and what helps with each
In the last days of life the body slows down, in ways that nurses and hospices know well. Knowing what each change means, and that most of them are not uncomfortable for the person, can make it easier to stay in the room.
This page is part of the guide to end-of-life care at home, within the wider section on end of life care. It covers the last few days. If your relative is not at this point yet, the last months and weeks describes the slower changes that usually come first.
The signs in the last days, and what helps with each
Not everybody has all of these, and they come in no fixed order. If you are not sure whether something is part of dying, ring the nurse and ask.
Sleeping most of the time
What you may notice
They sleep for most of the day and night, are drowsy when they are awake, and may drift in and out of consciousness. They talk less and seem less aware of what is happening around them.
What it means. The body is slowing down. Hospice UK says that being drowsy or unconscious does not mean they cannot hear you.
What helps
- Carry on talking to them in a calm voice, and tell them who you are and what you are doing
- Hold their hand, or play music they like, if it seems to settle them
Restlessness or confusion
What you may notice
They may seem agitated, pull at the bedclothes, not recognise people they know well, or see and hear things that are not there.
What it means. The NHS says medicines, or changes in the chemical balance of the brain, can cause confusion. Sometimes there is a cause, such as pain or an infection, that can be treated.
What helps
- Sit with them and speak clearly and calmly, reminding them who you are
- Try not to correct them about what they see or hear
Ring the nurse if they seem distressed. The team can look for a cause, and there are medicines that ease agitation.
Breathing that changes, with pauses
What you may notice
Breathing may become shallow and irregular, with long pauses between breaths. It can follow a pattern of deeper breaths, then shallower ones, then a pause, which doctors call Cheyne-Stokes breathing.
What it means. Marie Curie says these changes are a usual part of dying and not usually uncomfortable for the person. Sue Ryder says they can begin a short time before death or go on for 24 hours or more, and that everyone is different.
What helps
- Keep the room calm, and open a window or use a fan if the air feels close
- Hold their hand and talk to them gently
Ring the nurse if they seem to be struggling for breath or look distressed.
Noisy, rattling breathing
What you may notice
A wet, gurgling or rattling sound as they breathe in and out. It happens because they have become too weak to cough or swallow the saliva and mucus that collect in the throat and chest.
What it means. Marie Curie and Hospice UK both say it is unlikely to be painful or distressing for the person, and Hospice UK says it does not mean they need oxygen. It can be upsetting to hear.
What helps
- Change their position, with the head and chest raised and the body turned onto one side, to help the fluid drain
- Take a break from the room if the sound upsets you, or put music or the radio on
Ring the nurse if it is new, or if they seem uncomfortable. There is medicine that can reduce it.
Not wanting to eat or drink
What you may notice
They lose interest in food, then in drinks, and swallowing may become difficult, including swallowing tablets.
What it means. Hospice UK says the need for food and drink reduces at the end of life, and the NHS says that close to death the body can no longer digest food properly.
What helps
- Offer sips, ice chips or a damp mouth sponge if they want them, and stop when they do not
- Keep the mouth and lips moist with frequent mouth care and lip balm, using a water-based gel if they are on oxygen
Tell the nurse or GP when tablets can no longer be swallowed, so the medicines can be given another way.
Cool hands and feet, and changes in skin colour
What you may notice
Hands, feet and ears feel cold. The skin may look pale, bluish, mottled or patchy. On darker skin these changes may show more on the lips, around the nose or inside the mouth.
What it means. The circulation is slowing down. Hospice UK says these changes are normal and usually painless.
What helps
- A light blanket or a pair of socks if they seem cold
- Fewer covers, or an open window, if they seem too warm, because the body no longer controls its temperature so well
Passing little urine, and losing bladder or bowel control
What you may notice
They pass very little urine, or none. The muscles of the bladder and bowel relax, so they may lose control of them.
What it means. Marie Curie says passing little or no urine is normal at this stage.
What helps
- Ask the nurse for pads and bed protection, to keep them clean and comfortable
- Keep the skin clean and dry, and look at it whenever they are moved
Ring the nurse if passing urine seems to be uncomfortable, because a catheter may help.
Marie Curie says there is not one pattern that people follow. NICE guideline NG31, which sets out how doctors and nurses should care for adults in the last days of life, also reminds them that a person can sometimes stabilise for a while, so the team checks at least once a day and changes the plan when things change.
Watching someone you love stop eating is hard, and it can feel as though they are being left to go hungry. NICE asks nurses to support a person to drink if they want to and are able to, with frequent mouth care when they cannot. Eating and drinking near the end of life covers this, including the question of a drip, and Marie Curie's page on breathing changes explains the pauses and the rattle in more detail.
What helps
What you can do to keep them comfortable
There is less to do in the last days than in the weeks before, and what there is makes a difference. Nurses call it comfort care: keeping the mouth moist and the body comfortable, keeping the room calm, and being there.
Mouth care, little and often
Ask the nurse to show you
Changing position gently
As often as the district nurse advises
Sitting with them and talking
Hearing may carry on
Music, voices and a calm room
What they would choose
Taking turns, so someone is always rested
For you as well
The nurse, for anything distressing
Ring rather than wait
The nights can be the hardest part to cover. Night care at the end of life explains what the NHS may cover overnight. If you would like someone to sit with your relative through the night so that you can sleep, you can search for carers near you and compare their rates. A carer who stays awake all night costs £150 to £160 a night on PrimeCarers, with our fee included, and a carer who sleeps in the house and gets up when needed costs £130 to £145. Agencies charge up to £240 for a waking night. Waking night or sleeping night helps you decide which is needed, and if your relative has fast-track continuing healthcare, ask whether the package can include nights.
Who to ring
When to ring the district nurse or the out of hours number
In the last days, the district nurse or the hospice team is the first call for almost everything. NICE says a dying person and their family should be given a named professional to contact, and the numbers for out of hours services, so ask for both if you do not have them.
Keep these by the phone
Write the numbers in now, while there is time to ask for them.
District nurse or community nursing team
In the day
Their out of hours number
Evenings, nights and weekends
Hospice or palliative care team
If they are involved
GP surgery
In surgery hours
- If you cannot reach anyone on these numbers, ring NHS 111, say that your relative is receiving end of life care at home, and ask for somebody to visit.
Ring them if
- Pain, agitation, sickness or breathlessness that is new or getting worse
- Noisy breathing that is new, or seems to be making them uncomfortable
- Tablets or liquid medicines can no longer be swallowed
- Passing urine seems to be uncomfortable, or they cannot settle
- You are worried, or not sure whether what you are seeing is expected
- You think they have died
Ring about a symptom when it starts, rather than waiting for the next visit. Medicines for sudden symptoms, often called just in case medicines, are prescribed before they are needed so that a nurse can come and give them quickly; Marie Curie explains how just in case medicines work. Never give a medicine, or change how one is given, unless the nurse or GP has told you to.
If a symptom comes back, ring again. NICE asks the team to review symptoms at least daily, and to consider a syringe pump, which gives medicine steadily under the skin, when several extra doses have been needed. Pain and symptoms at home explains how each symptom is treated, and who is in the team explains who each of the people on your list is.
Whether to call 999
Why 999 is not usually the call when the death is expected
It is a hard thing to be unsure about at the bedside, so it is worth settling now, while there is time to ask the nurse or the GP. The short answer is that when someone is dying of an illness everyone knew about, the right help comes from the team that knows them.
| Who to ring | Why | |
|---|---|---|
| One of the changes on this page, or a symptom such as pain or agitation | The district nurse or hospice team. Out of hours, the number they gave you, or NHS 111. | They know your relative, can give the medicines already prescribed, and can visit. |
| Your relative has died, and the death was expected | The GP surgery or the nurse. Out of hours, their number or NHS 111. Not 999. | A doctor or a nurse needs to confirm the death. It is not an emergency, and there is no rush. |
| A sudden collapse or a death that nobody was expecting | 999, straight away. | Sudden, unexplained events need emergency help. An unexpected death may be reported to a coroner. |
| You have rung 999 in a panic, or could not reach anyone else | Tell the call handler your relative is receiving end of life care and has a DNACPR or ReSPECT form. | Show the crew the form when they arrive. Ambulance clinicians look for advance care planning documents like it. |
One of the changes on this page, or a symptom such as pain or agitation
- Who to ring
- The district nurse or hospice team. Out of hours, the number they gave you, or NHS 111.
- Why
- They know your relative, can give the medicines already prescribed, and can visit.
Your relative has died, and the death was expected
- Who to ring
- The GP surgery or the nurse. Out of hours, their number or NHS 111. Not 999.
- Why
- A doctor or a nurse needs to confirm the death. It is not an emergency, and there is no rush.
A sudden collapse or a death that nobody was expecting
- Who to ring
- 999, straight away.
- Why
- Sudden, unexplained events need emergency help. An unexpected death may be reported to a coroner.
You have rung 999 in a panic, or could not reach anyone else
- Who to ring
- Tell the call handler your relative is receiving end of life care and has a DNACPR or ReSPECT form.
- Why
- Show the crew the form when they arrive. Ambulance clinicians look for advance care planning documents like it.
Sources: NHS community nursing and hospital guidance on expected deaths at home; NHS England London region guidance on expected and unexpected deaths in the community (2023); the NHS and Marie Curie on DNACPR.
An ambulance crew's job is emergency treatment. NHS guidance for London says that when an expected death is treated as an emergency, families can face resuscitation attempts that were never going to help, the police being called, and delays, all of which add to their distress.
A DNACPR decision (do not attempt cardiopulmonary resuscitation) records that if your relative's heart or breathing stops, nobody should try to restart it. The NHS explains DNACPR decisions: it is usually recorded on a special form, kept in the medical records and often printed and kept at home, and it is about CPR only. Everything else, including care, treatment for symptoms and support, carries on. The form is not legally binding; an advance decision to refuse treatment is.
ReSPECT is a wider plan, written by the person, the family and the professionals together. It records the care they would or would not want in a future emergency when they cannot say for themselves, can include a recommendation about CPR, and is not legally binding either.
Keep the form where anybody in the house, including a carer, can find it quickly, and ask the nurse where they would like it kept. Marie Curie advises keeping a printed copy at home in case an ambulance is ever called, because the different NHS systems do not always link up.
When someone dies
The first steps after an expected death at home
At the very end, breathing usually slows, with longer pauses between breaths, and then stops. Marie Curie describes what you may see: the face relaxes, the mouth may fall open, and the skin may look paler than before. Nothing has to happen quickly after that.
- 1
Take the time you need
The first hourSit with them, hold their hand, say goodbye, and call the family who want to come. You can stay in the room or leave it. There is nothing you have to do straight away. - 2
Ring the GP surgery or the nurse
When you are readyIn surgery hours ring the GP, or the district nurse or hospice team if they gave you a number for this. Out of hours, use their number or ring NHS 111. Say that the death was expected. - 3
A doctor or nurse confirms the death
VerificationThey check that breathing and the heart have stopped, and complete a form that allows the funeral director to take your relative into their care. Some families prefer to leave the room while this is done. Leave any syringe pump and other equipment in place for them. - 4
Ring the funeral director when you feel able
AfterwardsOnce the death has been confirmed, the funeral director can come. Marie Curie says there is no need to rush this. If you would like your relative to stay at home for longer, ask the nurse and the funeral director.
The Royal Free London NHS Foundation Trust's leaflet on what to do after an expected death at home says the person who confirms the death can disconnect a syringe pump, and that unused medicines go back to a pharmacy. Your own team may do things a little differently, so ask them.
If a paid carer is in the house, they can stay with you while you make the calls, let the nurse in, and sit with you if you would like them to. They cannot confirm the death or sign anything. What happens next, the medical certificate, the medical examiner's call and registering the death, is covered in the first days after a death at home, along with what happens to a carer's bookings. When you are ready, looking after yourself at the end is written for you.
Questions
Questions families ask in the last days
Breathing often changes: it may become shallow and irregular, with long pauses, and it may sound wet or rattling. Hands and feet may be cold and the skin mottled or bluish, and the person is usually asleep or unconscious for most of the time. Sue Ryder says breathing changes can begin a short time before death or go on for 24 hours or more, and that everyone is different.
They may. Hospice UK says that being drowsy or drifting in and out of consciousness does not mean a person cannot hear you, and suggests carrying on speaking to them, holding their hand, or playing music they like. Tell them who is in the room and say what you want to say.
Marie Curie and Hospice UK both say it is unlikely to be painful or distressing for the person, although it can be hard to listen to. Turning them onto one side with the head raised can help, and if it does not, ring the nurse, who can give medicine to reduce it.
Offer sips if they want them and can swallow safely, and stop when they do not. NICE guideline NG31 asks nurses to support a dying person to drink if they wish to and are able to, and to offer frequent mouth and lip care. A drip is sometimes discussed; NICE says it is uncertain whether it lengthens life or whether going without shortens it, so talk it through with the nurse or GP. Eating and drinking near the end of life covers this in more detail.
Not usually, if the death is expected. For symptoms, ring the district nurse or hospice team, or the out of hours number they gave you, or NHS 111. After an expected death, ring the GP or the nurse, or NHS 111 out of hours. If something sudden and unexpected happens, ring 999. If you do ring 999, tell them about any DNACPR or ReSPECT form.
Yes. On PrimeCarers a carer who stays awake all night costs £150 to £160 a night, and one who sleeps in the house and gets up when needed costs £130 to £145, both with our fee included. A carer sits with your relative, gives personal and mouth care, and rings the nurse if something changes; the nursing and the medicines stay with the NHS team. Night care at the end of life covers the options.